Saturday, September 21, 2013

Epilepsy is always having to be vigilant.Epilepsy is knowing every escape route in case of a seizure.Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.Epilepsy is doing all that, knowing all too well that no one actually looks.Epilepsy is hoping people don't run away the first time you have a seizure.Epilepsy is always being told that 'there are meds for that'.Epilepsy is always having to be aware of potential flashing lights.Epilepsy is having to choose between leaving a place & risking the lights.Epilepsy is teaching other people how to turn off their red eye reduction flashes.Epilepsy is having to explain why that matters.Epilepsy is people telling you that your safety is less important than their picture.Epilepsy is being yelled at for advocating for yourself.Epilepsy is being yelled at for not advocating firmly enough.Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.Epilepsy is being told you don't have a real disability.Epilepsy is often being disabled by the very people who tell you that.Epilepsy is spending days making arrangements so an event is accessable.Epilepsy is having those agreements be broken, ruining your weekend.Epilepsy is being expected to thank people for almost making an agreement.Epilepsy is being yelled at for saying “you could have done better”.Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.Epilepsy is people telling you to stay in your house if others cause dangers.Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.Epilepsy is being expected to be grateful when people almost treat you as a real person.Epilepsy is knowing they don't think you are a real person.Epilepsy is always hearing “you are an extreme minority so you don't matter”.Epilepsy is hearing that from another minority who should get it.Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

Saturday, September 14, 2013

In the style of What Epilepsy Is.
Like that piece, this one is more about how other people react to
autism than what autism itself causes. I'd think that'd be apparent, but
one never knows.

Being autistic is being judged.Being autistic is being yelled at for existing.Being autistic is being subjected to verbal, physical and emotional abuse for existing.Being autistic is being at high risk of being killed for existing.Being autistic is knowing damn well that anyone who hurts or kills you will get away with it.Being autistic is knowing that the person who hurts or kills you will be a folk hero.Being autistic is being looked on as a tragedy.Being autistic is teachers doing everything they can think of, legal and illegal, to make you not their problem.Being autistic is people being scared of you.Being autistic is people being scared of you when they haven't even met you.Being autistic is being looked on as an emergency.Being autistic is being told that your way of seeing the world is objectively wrong.Being autistic is being told you have no empathy.Being autistic is being told that by people who make no effort to see things your way.Being autistic is being told that your very existence is a danger to you and to others.Being autistic is being called a burden.Being autistic is knowing you aren't going to get acceptable medical care.Being autistic is being assumed incapable of having friends.Being autistic is people talking to your friends instead of you.Being autistic is people assuming you are incapable of understanding things.Being autistic is people hoping you are incapable of understanding things so they can justify excluding you.Being autistic is people excluding you anyway, because 'autism' is reason enough.Being autistic is fearing for your job when people find out.Being autistic is being erased-no one is like you in the media.Being autistic is people disbelieving you are what you are because there are no autistic adults in the media.Being autistic is having both your strengths and your weaknesses weaponized against you.Being autistic is having to qualify everything you say as only applying to you.Being autistic is doing exactly that, and still having people attack you for 'assuming you speak for [my] child."Being autistic is doing exactly that and people still demanding you play universal translator.Being autistic is those same people yelling at you when you tell them something they don't want to hear.Being autistic is having very personal details of your life demanded of you.Being autistic is being called 'tantrumming' when you don't answer said invasive questions.Being autistic is giving 95-97% in every social interaction.Being autistic is knowing that others resent giving even 3%. Being autistic is every socialization problem being your fault, for you are the broken one.Being autistic is knowing that the bullying you are subject to is socially sanctioned and celebrated.Being autistic is knowing that your successes are resented.Being autistic is charities that are supposed to help you trying to eliminate you.Being autistic is being physically attacked at those charities' events for daring to show up.Being autistic is being assumed to be the aggressor in those and any other situation.Being autistic is having quack cures constantly shoved down your throat.Being autistic is knowing that no one wants a child or friend like you.Being
autistic is knowing that if you point out how society treats you,
people are going to challenge your anti cure status as disingenuous.Being autistic is knowing that if you demand equal treatment, people will challenge your support needs.Being autistic is knowing there is no way to win anything, ever.Being autistic is fighting to be seen as an actual person.Being autistic is knowing that fight will not be won in your lifetime.Being autistic is fighting that fight anyway.

Wednesday, September 11, 2013

Additionally, DYMPHNA wants you to know that they are a ladle, and that they are not me. They did, however, get the ladling from me. [Me is Yes, That Too.]

I am patently terrible at writing introductions, so rather than make some big to-do about saying what I’m going to say before saying it, I think it’s a much better idea to dive right into the heart of the matter at hand. I will give the exposition of telling the reader that this is a story that touches on two major and commonly made themes of this blog: (1) that the expectation that Autistics be as “normal” as possible screws Autistics over consistently, (2) that Autistic children, when permitted to survive past childhood, become Autistic adults, and (3) functioning labels are bullshit.

The germ for this post started when I read a blog post (http://autisticchick.blogspot.com/2013/03/imagine-this.html) that everyone should read wherein the author talks about the some of the prospective futures they face as an Autistic. Well, here I am, a college degree and some years later, able to speak on the matter from the other side of the chasm.

Let me level with you: my current situation is not good. I recently lost my job, I’m in massive debt, I’m being evicted from my apartment, and my medical insurance will have probably expired by the time this is published; all the while, I have an occupationally useless degree, one reference from a job that fired my in a field I didn’t particularly care to work in for reasons that will be revealed, and I live quite far away from any family whom I am way too proud to ask for help for reasons that will also be revealed. Despite my bleak situation, the relevant aspect of this story isn’t the present situation, but rather how this situation came to be. It didn’t happen suddenly that I just found myself unemployed, penniless, and approaching destitution. This tale actually starts before I was in high school.

Our story begins in the infernal times plagued with bullying, hormones, and lunchroom antics owing largely to a combination of the former two and the students having ready access to caffeine, times known as “middle school”, which must have been a punishment for some horrific sin I committed in a past life as this clearly must violate international torture laws. During this time, I had a full time aide whose job was to come to my classes with me and help me remain organized and get things done. It was something that I needed, as, when I didn’t have one back in fifth grade, my academic life started to go completely to pieces (herein lies the subplot of me crying at the end of the first quarter in fifth grade because I got a C in English class, which was always my worst subject). In sixth grade, it was decided that this aide would join me for classes. She was by nature a lovely person and, although we certainly tortured each other a little bit, her being with me was helpful to my overall scholastic life. In seventh grade, I had different person with me. This person did not handle the rocky nature of our relationship quite so well and, during the final quarter of my seventh grade year, I believe she basically fired me for being too difficult to handle. While I’m generally unapologetic about my personality and whatnot, I readily admit (and readily admitted at the time) that my 12-13 year old self was probably not the easiest person to manage and remember distinctly make several attempts to better our relationship, but alas, it was not meant to be, so I faced the fourth quarter of that year alone. I’m sure the results were absolutely unpredictable.

In that quarter alone, my grades dropped. My grades dropped in a measurably significant way. A class in which I had gotten an A(+) every quarter (history) went to (I think) a C+ during the final quarter. So, in light of these stellar results, someone had decided that I was best served flying solo during my eighth grade year, which, I will tell you, went swimmingly. So swimmingly that I nearly failing English two out of four quarters and ended up being on some sort of grounding for my grades the entire time. The story in history was not as bad as the story in English class, but it was still not stellar. Science only was good because (a) I’m good at science and (b) that teacher would have let me get away with MURDER in that class and math was only good because the homework didn’t count as part of the grade.

High school got even worse in some respects. Up to this point, aside from English class, the material was never actually difficult, but now that I had transferred to a new district for high school with challenging curricula, I had all of the previous difficulties associated with keeping myself organized and having the executive function to get homework done on time compounded with a curriculum that was something that no course had ever managed to be: intellectually challenging. This was also not helped by some teachers who, for whatever reason, had decided that the accelerated curricula I was in were too difficult for me, despite the fact that I knew the information, but could not regurgitate in a way that meshed with their formulaic grading styles. I, a highly gifted student, finished high school without one AP credit in a school that offered over a dozen. Why was this happening? The issue was clearly that I was not studying or working at this. I spent every single night of my life doing homework those two years. I can still talk about US history up to the civil war in entirely too much detail owing to the hours of time I spent studying that material. Things were not helped by the fact that I had a parent who decided that I didn’t hate myself enough for failing to achieve academically, whose idea of how to motivate me was to scream at my for hours on end and to insult me by comparing me to my late grandfather who was starting to die of Alzheimer’s at the time and for whom this parent had no respect or to tell me that my fate would be to work at McDonald’s and live in a trailer park if I insufficiently hated myself for my academic failures, which were certainly the result of my moral failures. I just wasn’t trying hard enough. If I had been trying, I would have done better.

Unfortunately, by the time college came around, this was the attitude I had internalized, that my failures were merely reflections of insufficient effort on my part. Some aspects of the academic life got better, but some got much, much worse.

First of all, no one cared if you missed class; you would just fail. Mornings were never a great time for me. Now they were my absolute kryptonite. Now, there wasn’t someone making sure I got up in the morning, nor was there someone telling me to go to bed at reasonable hours. Many times I fell asleep after sunrise and awoke after sunset and missed every class of the day, only to spend the night aimless wandering the internet as I do now. Sometimes I would be up for 24 hour increments and sleep for twelve hour increments.

Second of all, I never actually developed a mechanism for making myself do homework. Rather I developed strategies for figuring out how to bolt around the school to get a paper signed so that my parents could see what I had to do and make me do it. However, in college, if you don’t do the homework, you fail and between missing classes and not doing the work, I failed classes. Not just one or two, but several. I failed classes that I understood to such a high level before taking that class that I could have passed the final and forgone taking that class if that had been an option. I failed classes because I meant to drop them, but never remembered to do it until the drop date had passed. I almost got kicked out of college during my fifth year, but managed to stay in and get my Bachelors Degree in a useless liberal arts field that presented no career opportunities.

Then, after I graduated, the time came for me to get a job. So I applied and luckily had sufficient experience with my part time job in college that allowed me to get a pretty good paying full time job. I took the job, moved two states away from home, and started trying to be an adult. You know, make friends, go to work, pay bills, have fun, etc. Well, this didn’t go so well. Turns out that making friends in a completely new environment is hard. Really hard. Especially when you don’t have school to help you do it. I had two friends vaguely in the area, one of whom was never available because of conflicting schedules and one of whom I ended up living with in a hellish arrangement that may have ruined our friendship. On top of all of this, I started to seriously struggle at my job about eight months in due to serious executive function issues. It took nearly a year of strife with my boss before I finally lost my job, a year that warped my mental health horrifically. In the meantime, my living situation had deteriorated into squalor living with a roommate who had become emotionally abusive in a bug infested hellhole hours away from anyone who had the resources to help even if I weren’t too damn proud to ask them. I started a huge fight with my family at one point that pretty much ended up with me breaking down into tears about how much I hated every aspect of my life. I made a plan to change it, but sticking to plans is really hard. Four months later, I’m broke, facing eviction, in debt for school, and, probably most importantly, uninsured. I live in a trashed apartment. My laundry hasn’t been done for weeks. I love to cook, but every time I go to the grocery store, I seem to walk out with eggs, butter, and lemonade since actually planning a week of meals is not a skill I ever really learned (not to mention that attempts to do so and sticking to the aforementioned plans were failures, as sticking with plans is hard), thus resulting in my wasting an obscene amount of money on take out. I haven’t managed to pay the rent in months and am being evicted. This is my current position.

I mention being uninsured because the upside to me losing my job is that I might finally have the spoons to get some of my personal life in order. Part of that meant seeing doctors and getting prescriptions for things that would help me get my life together and figure out what I’m doing. However, now that I have the downtime to permit me the executive function to see doctors and get drugs that, had I been able to get them while I had a job, might had saved me this job, I will not be able to obtain them because I will not have health insurance. This is my life.

We all love to believe that some happy result waits for Autistics like me because I’m “so smart” and “so high functioning” that I can’t not be successful, but the truth is not the dream you want to see. The truth is that I, admittedly the picture next to “high-functioning” in the dictionary, failed. I failed at living on my own. I failed at having a job. I failed at keeping my finances in line. I pretty much failed at everything. Moreover, despite my great disability pride, despite me knowing that the reasons are not necessarily my fault, I will probably have to be literally homeless or sucking dick for money before I ask my parents for help because I know that the judgment will be that my failure is my fault. Even if they love me just same, that judgment is inescapable.

I was taught that the way I functioned in sixth and seventh grade, taking help and being successful, was fundamentally wrong. I learned at some point that it is better to fail on your own than to succeed with help, because succeeding with help doesn’t really count, not to mention that they were, unfortunately, preparing me for the reality that there really isn’t help for people like me. Just like the aforementioned blogger explained, if you’re smart, you get no resources. As Neurodivergent K will readily tell you, twice exceptional is twice fucked. Who cares that I got an A+ in my college level physics class, that I can analyze music by ear, that I understand the complex political situations surrounding U.S. politics in the reconstruction era, that I can recite 40 digits of pi, or that I have several Robert Graves poems memorized and ready to deploy at a moment’s notice? None of that has helped me at this point. All of that has been distractions that have prevented me from focusing on what I should really be focusing on, but all of that is the reason that I will be laughed out of the room if I talk about having a disability. So I guess I’m resigned to be another one forced into the cracks. This is the reality of an ableist world.

~~~~~~~~

That’s what I wrote several months ago. Things have since changed. I managed to swallow my pride and tell my family what’s happened. I resolved the rent situation with my landlord and got them paid current. I now have a viable career plan that I am executing and I live in a place where I have tons of support.

But the thing that I want everyone to take home from that blog post is that being gifted and being disabled are not mutually exclusive. This is something that people have written a lot about, including the “Two Women” posts on both “Yes, That Too” and “That Crazy Crippled Chick”. What I want everyone to take away from this is that functioning label rhetoric isn’t just annoying. It doesn’t just irritate us, although it does irritate us. When you tell us that we’re took high functioning and that we’re “Not like your child”, you are denying the truth that, while we are Disabled and proud, we are still disabled. We need help sometimes and this whole high-functioning rhetoric creates both a culture of shame around us having needs and denies us the help we do need when we need it.

Saturday, September 7, 2013

So something I've caught a lot of crap about lately is that I don't
retain everything I perceive. I have a phenomenal memory (as many of us
do), but if something is presented in a way that's not very good for me,
I don't move all of it from short term to long term memory. That's just
the way it is.

However, what the people taking this to mean I
cannot learn are not understanding is that I perceive far more than
they do. I probably don't catch everything, but not much goes unnoticed.
As I sit here now I am aware of the smoothie being made 25 feet away
(it has bananas and berries), I am aware of 5 different conversations
about 5 different things, I feel and hear the lights, including the one
about to die 10 feet to my right, the butt groove in the chair I am
sitting in, the crookedness of the table directly in front of me, the
grinding of the coffee across the big open space, the smell of the
daily special (I think it has sausage). When I go to the hospital or
doctor I can remember the names of the nurses because they wear name
tags. I notice what hand people prefer.

In other words,
remembering even half of what I take in would be remembering more than
many people indicate noticing at all. If I remembered absolutely
everything I'd have more conflicting information than I can deal
with-that threshold is already awfully close. Discarding some of those
conflicting details is how I have cognitive capacity to learn new things
rather than spending all my time justifying 2 opposite ideas as
compatible.

Wednesday, September 4, 2013

Ben Forshaw is a husband and software developer rapidly approaching 40 years of age from the U.K. who, despite holding down a job, relies heavily on his wife to keep his life in some kind of order. He has Aspergers Syndrome and blogs about his experiences at "Married, with Aspergers".

I spent for too long at the hospital yesterday accompanying my wife as she went through a series of tests and scans. The X-Ray/Ultrasound department has recently moved to a refurbished suite and it's all new and shiny.

Too shiny. The lighting makes its white walls harshly bright. It's all straight lines and square corners with no relieving softness. I know hospitals are clinical - obviously - but do they really have to look so cold and unfriendly? I was feeling on edge when we got to the department reception desk. Luckily my wife dealt with the receptionist - with the bright lights, echoing footsteps and other voices all claiming my attention I couldn't concentrate on what he was saying at all. We got directed to a small waiting area off one of the corridors - an alcove with a row of six chairs on each side, facing each other. About half the chairs were occupied; I took one at the end away from the corridor with my wife sitting next to me.

I feel uncomfortable in waiting rooms at the best of times; I get very anxious when people are sat looking at me. And I don't like to feel I'm being overheard when I talk to somebody, so I was inhibited from speaking with my wife. I ended up just sitting there, stimming in a fairly subtle manner by tapping one thumb on the other with my hands together, fingers intertwined - trying to keep reasonably calm. However the pressure of having other people facing me in such a small space was making me increasingly anxious. (I have similar problems using public transport - that's why I will walk miles rather than catch a bus.)

So there I am in this small waiting area with too many strangers looking at me, the harsh light making me feel even more exposed and uncomfortable. I can feel I'm getting close to a sensory overload. And then somebody goes through the door in the corridor just outside this alcove. How to describe the noise made by that door? If you've seen those old horror films where the castle door slowly closes to the accompaniment of a tortured squeal from its stiff, rusted hinges you'll know exactly what this door sounded like. That did overload me. I had to shut my eyes every time that door opened or closed because it was as if somebody was shining a spotlight into them. It hurt. I was starting to ache from the tension across my shoulders and up my neck.

I thought to myself that they couldn't have designed a more effective environment to torture somebody with sensory processing issues if they had tried. I just felt like curling up in a corner and shutting down but I had to keep myself going to keep my wife company. By the time we got out of there I was tense and exhausted and just wanted to rest. It took a massive effort to avoid shutting down and left me drained. I'm not sure how much support I gave to my wife but at least I was there and mostly responsive. I find it hard to believe that a hospital could get its design so wrong in terms of providing spaces for people that are comfortable and promote a calm state of mind.